I wish I could help my friend find a good dermatologist that can help her with her skin and hair conditions like this is something serious. She’s just been through hell with this situation
Based on the living hell that has become my life thanks to societal stigma and systemic bias in our healthcare system, facilitated by the Health Information Exchange (aka HIE or in RI, CurrentCare), I’d like to accuse the aforementioned of encouraging both infectious disease and substance abuse to thrive in our society. I speak from personal experience that has left me extremely unwell and wracked with fear in the dangerous, untenable, unacceptable position in which they have left me: like something out of a horror movie, I can feel this thing writhing within my head, neck, and back. I have been BEGGING for help for over a year, expressing my concern about relapse after 5 years in recovery, but all I’ve gotten in response was gaslit, traumatized, neglected, drug tested, mocked, mortified, patronized, and rejected as either delusional or dishonest by Brown University physicians and other, unaffiliated clinicians alike. I've had doctors laugh in my face, make false, unfounded accusations, and taunt me with rude remarks. They’d ask me what I hoped to gain by being there, passive aggressively as if the gaping, open wound festering around my neck and oozing green puss was merely a paper cut.
Despite repeatedly passing their UA’s, they kept giving me these drug tests instead of the diagnostic testing I had been begging from the jump. They wrote me off as a hysterical girl while the still-undiagnosed problem (aka a horrifying infection, presumably, that has destroyed my scalp, cost me the long locks of curly hair that was once integral to my identity, and the epidermis on my head) was not easily observed, hidden beneath my thick mane. They tortured me for months on end while I endured excruciating pain and abject terror on a constant basis before reluctantly and angrily swabbing my wound once it finally began to creep down my neck from my scalp in the form of a rash. Meanwhile, I remained helpless to address the red-blooded bugs and even creepier things my infested scalp produced after having finally buzzed off my long locks in desperation, an act which they perceived as proof of insanity.
Their perspective stunted by the clinical research gap that plagues American medicine, they finally carried out this minimal and basic diagnostic test with disdain: exaggerated sighs, eye-rolls, and sneers, as if I was wasting their “valuable” time. This is why it took three months of constant visits to specialists, ER's, and a primary care doctor who turned out to be actively perpetuating my neglect (and who is no longer thusly employed at the same office where I saw her), to finally get diagnosed with a staph infection, which emerged, among other afflictions, secondary to my main problem.
I was admitted to hospitals four times over with a skyrocketing white blood cell count of 30,000, hooked up to IV's and pumped with antibiotics for days on end, only to find, time after time, that the issue was not resolved. No one was concerned with finding a definitive explanation or solution, still convinced that I had somehow manifested this myself in a devious ploy to acquire drugs. Instead, they continued to mock my pain, for which I have always had a notoriously high tolerance, and ignore the bulk of my symptoms—the most alarming ones in particular—as invented or imagined regardless of the overwhelming wealth of hard evidence and photos I presented to the contrary, all of which they barely glanced at before dismissing them as irrelevant. Unwilling to perform their own investigation to see for themselves, I was left with a severe problem that most every doctor willfully ignored, uninterested in obtaining facts or evidence as they were. I remained virtually homebound for months, plagued by feverish hallucinations and paranoia in addition to my physical discomfort, unwilling to venture out in public with the masses gawking at my green neck.
I hope my fellow persons in recovery will learn from my mistake and forget the dangerously bad advice we all receive to be honest with medical providers about our past before their own naive disclosure is used against them with impunity and without shame in the aggressive and longterm gaslighting of their healthcare under the most dire of circumstances. Moreover, I know my voice is of no consequence, that it will be ignored once more and drowned out by all the noise and mainstream chatter that defines social media, but I’m going to put it out there anyway via every outlet I can find until people in my demographic receive the same care and attention by the medical community as anyone else, the same respect as they deserve and the treatment they are entitled to as American citizens.
Quite frankly, the status quo at present is offensive and unacceptable. Furthermore, it leads struggling individuals like myself to overdose in despair, years of sobriety tragically and needlessly upended by 8 months of medical gaslighting and mistreatment at a time of genuine need. The truth is that after all this time, I’m exhausted, and I am sincerely uncertain if I can take much more of this: my whole life on hold while an unidentified, idiopathic infection has its way with me, and no hope in sight to light my way in this unending darkness...
So, I'm going to post my rant far and wide on this platform and in regulatory complaint portals whether anyone wants to hear it or not. Unfortunately for me and the providers responsible for my continued suffering, simply ignoring the plethora of horrifying medical evidence and my extremely alarming pathology does not make them cease to exist. Therefore, should this approach fail me, I intend to shave my head—down to the skin—on film, then saturate social media with the video.
I have seen the snake-like and criss-cross imprint it leaves on the hydrogen peroxide-soaked pads I press against my sizzling head. I can feel it squeezing my throat and moving deep within my back. I think it might even have a grip on my heart… and I promise all those providers, unhelpful politicians, and the public at large that what I uncover and the lawsuit that ensues will at long last teach those guilty of my mistreatment and their complacent cohorts exactly where they stand relative to this insignificant junky (if this “thing” doesn’t rip through my scalp itself or just kill me in the meantime—a consequence threatened by an intensifying pressure in my head and my torso that torments me at present). My fear will become theirs when I knock them down here to the ground where they belong by exposing the deeply disturbing state of my scalp and the advanced affliction concealed within it, however long it takes. I will not stop until I achieve something like justice for this egregious betrayal and the many others just like it that society ignores, even if I have to take one for the team. I will do it gladly out of principle and without fear. You see, my argument is grounded in fact, and I have no doubts, but they and I well know just how shaky is the ground they stand upon by contrast, even if their dissonance deludes them.
Is arrogance enough to protect their reputations in a notoriously disparate system? Perhaps, but my intellect and my will have not failed me yet, and I’ll be damned if they’re going to start now. So, if I survive whatever new horror is taking place and moving within me right now, it’s only a matter of time before these providers’ hubris, their hate, and their shaky assumptions cease to sustain them… and they should be worried, because they’ve never seen an unrelenting fury quite like mine. Let’s hope they don’t have to.
**This article provides an excellent description of the joy and amusement that ER staff get from using their alert system to gaslight patients with a history of substance abuse (active users and those in recovery, with my own recent and horrific experience serving as proof of the latter, because I assure you, no amount of clean UA's could satisfy this hateful and arrogant bunch of prigs and their terrifyingly dangerous, nomothetic hive mind that malfunctions in the face of novelty):
https://t.co/eaVDckx2hO
@GovernorHobbs@AZDORmedia Like for some families not all families I feel like Arizona should dedicate to all families, hard-working families not just some